Siobhan, pictured with her parents Johanne and Alan, goes to bed at 4.30pm every day. Photograph: Brenda Fitzsimons

Johanne Powell says it takes years before a parent can start to realise how they feel about having a disabled child. Photograph: Brenda Fitzsimons

Siobhan with her family dog Charlie at their home in Fethard-on-Sea. Photograph: Brenda Fitzsimons

If you would like to share your story of caring for a relative with a disability, please contact Rosita Boland on rboland@irishtimes.com

I’m not doing this job by choice,” Johanne Powell says. “I’m doing this job because I have to do it, because there is no alternative. I don’t want to do it any more. I’m bored. I’m bored out of my tree doing the same thing day in, day out, with no changes. I swear to God I could walk into a supermarket and rob the place blind, because once you have a child in a wheelchair, by definition you’re a good person. It doesn’t matter what you really are.”

Powell is talking about the challenges of caring for her disabled daughter, Siobhan, who is 32. Siobhan is the only child of Johanne and Alan, her husband of 39 years.

“One nurse told me I’d get my reward in heaven. It’s so condescending. What annoys me the most is when people come up to you and say, ‘God only gives these special children to people who can cope with them.’ Well, he can take her back, then.

“Sorry. I’m going to be very straight about it: she’s not special. She’s damaged goods. I wanted the child that I thought I was going to have. The one that was going to have two children by now, and have finished university studies, and be having a life for herself, in a home where I could visit and babysit my grandchildren. I wanted to have that child.”

Johanne and Alan met in 1975, when they were both working on a Norwegian oil tanker. After their marriage they moved to Fethard-on-Sea, in Co Wexford, where Alan’s family has long-standing roots. The intention was that they would both remain working.

Siobhan’s birth, in 1984, changed all their plans. She had the rare genetic condition of ring chromosome 8, and initially she wasn’t expected to survive more than a year. Born with an unusually small head, she has profound mental disabilities. She cannot walk, is nonverbal, does not eat solid food, is doubly incontinent, and has only one kidney, which functions at well below normal levels. “It’s chronic renal failure that we expect will kill her in the end,” Johanne says. Although she is 32 Siobhan wears clothes for an eight-year-old. She has never weighed more than 21kg.

The Powells received the diagnosis of her chromosomal disorder shortly after birth, once tests were complete. “I went to pieces after that,” Johanne says. “I cried for a month. I lost a month of my life. I don’t remember anything about it.

‘I was going to be the perfect mother’ “Before she was born

I had this image in my head that I was going to be the perfect mother. That our baby would be breastfed, and given organic food, and then we’re left with a child who doesn’t want anything to eat.”

Siobhan was tube fed for six months, then began to take liquids. Johanne says that Siobhan has eaten a tiny bit of mashed potato twice in her life; otherwise her diet is entirely liquid.

Alan took nine months off work after the birth, and stayed in Fethard to help out. Then he had to go back to work, which required him to be at sea for months at a time. “It was very hard,” he says. “But someone had to work, to look after the family.”

“I found it so hard and bewildering to have a new baby – and, moreover, to be the mother of a profoundly disabled child,” Johanne says. “I was being told that she was going to be needing physiotherapy, speech therapy, every kind of therapy. All I could think was, I’m her mother; when am I going to have the time to be her mother in the middle of all these therapies she needs?”

‘It can make or break a marriage’

Siobhan's disability is not a result of any genetic abnormalities in her parents: it just happened. They subsequently tried to have other children but were unsuccessful.

As Siobhan got a little older the Powells discussed moving to Norway, where Johanne was born, and where Siobhan would get better public-healthcare support. In the end they didn’t move.

“Alan really didn’t want to go. And everyone here in Fethard knows Siobhan, and she’s part of the village. It would have been better for me if we had gone to Norway but not for anyone else. God, that makes me sound awful saintly.”

Alan continued to work at sea, three months on and three months off. He retired at 55, in 2005, and his presence has made day-to-day life easier for the household, in that Johanne now has constant companionship. “Having a disabled child either makes the marriage very strong or breaks it up. It made ours stronger,” she says.

Now he’s home from sea Alan keeps ducks, geese and hens and maintains two polytunnels that provide many of the vegetables for the house. Most days he’ll take Siobhan out for a drive, and he’s the one who does most of the carrying and lifting of his daughter.

Podcast: Rosita Boland on carers in crisis

Siobhan’s bright, sunny bedroom was redecorated this spring. “There used to be curtains with monkeys on it, and wallpaper with clowns and animals. We wanted to make it into a room for a young woman,” Johanne says. The lovely new wallpaper is of yellow and silver alliums. It hints at the occupancy of the grown woman that Siobhan is in calendar years.

Additional elements of the room suggest other things: the changing table opposite the window that isn’t baby sized; the picture books; the odour of urine that is a side effect of her kidney problems.

‘You can never be spontaneous’

Siobhan’s routine has not changed substantially for decades. “It’s the same thing every day,” Johanne says. One parent gets her up in the morning, changes her, dresses her and gives her something to drink. On weekdays Siobhan is collected at 8am and brought to the HSE-funded Ard Aoibhinn Centre, in Wexford. She returns between 3pm and 4pm.

When Siobhan is brought home from the centre that afternoon I am with the family as Alan goes to fetch her from the door. “Hello, Puddin’,” Johanne croons to her as Alan brings her into the kitchen. Her nicknames are Puddin’ and Muffin. She doesn’t seem to register my presence, but the family dogs, Charlie and Toby, come over to say hello to her, and she reaches out to them.

Siobhan has something to drink and spends an hour or so nuzzled into Johanne’s neck, holding her phone, which is playing cartoons. As her eyes are particularly sensitive to light she prefers to be under a rug. Over the sound of the cartoons the grinding of her teeth is constant.

By 4.30pm each day Siobhan goes to bed. Her gradual renal failure means that she increasingly sleeps for long stretches of the day. At 10pm one parent will get her up to have a drink; then it’s back to sleep.

“You don’t exactly get a lot of mental stimulation from this sort of thing,” Johanne says wryly.

The Powells have three weeks of respite a year. Other than that they are full-time carers every weekend and from the time that Siobhan arrives home each afternoon.

“I don’t know what Wexford town looks like after five o’clock,” Johanne says. “Maybe once or twice a year I’d go to the theatre or cinema. But normally I’m home here every day at three o’clock, because I have to be. You can never be spontaneous. We’re going to a wedding next year, and that has been planned for months and months. We can’t even do something as simple as saying, ‘We don’t feel like cooking tonight. Let’s go down to the village and eat out there instead.’ We can never do those things.”

50 waiting for a residential bed

More than three years ago the Powells started to look for long-term residential care for Siobhan in Co Wexford, somewhere they could visit her regularly.

“I think what’s wrong with the system is that they’re not looking on us and Siobhan as individuals,” she says. “Siobhan is almost 33 years old. As far as we’re concerned she should have moved out of here at 25 at the latest, probably earlier, to have a life away from us. She’s entitled to get a life away from us, and we’re entitled to have a life for ourselves, too. I don’t think she should have to sit at home and be part of us; she’s in a symbiotic relationship with us.”

So far they have had no success in finding a place. Her name has been on a waiting list since 2013. On July 13th last year, the HSE’s Wexford community-services branch wrote to the Powells.

“There are currently over 50 service users listed for a residential bed,” it explained. “The waiting list extends back to 2007. We are unable to provide you with an average waiting time, or indicate when a bed may be available. When a vacancy arises, the waiting list is reviewed by health professionals and a decision is then made regarding allocation. The service user with the highest need/priority, at that time, is allocated the residential place.”

A query to the HSE about the number of people with disabilities currently awaiting residential placement in Co Wexford revealed that there are now 61 people on the waiting list. There are 158 bed places in the county.

A statement from the HSE said that “high-priority service users” are provided with home support, respite and day services until a residential place becomes available.

The HSE’s goal is “to support service users in their homes, in day services or with respite provision”. Service users and their families are “the centre to all decisions made”, it said.

‘There is no such thing as retiring’ This summer

Siobhan was ill for eight weeks, and stayed at home. Her parents took her for blood tests, to try to discover if her kidney condition was deteriorating.

“The doctor told us the blood tests were fine and that he’d see us in another 10 years,” Johanne says. “I was, like, ‘Ten more years?’ Which is a terrible thing, because it was happy news, but at the same time, in the back of my head, there’s a voice saying, ‘Ten more years?’ Can I survive 10 more years of this?”

“I want to be able to have a life while I have a life,” Johanne says. “I want residential care for my daughter. There is no such thing as retiring for carers unless you die.

“It’s hard to say these things, because you do feel guilty about saying you don’t want your daughter at home. It’s not that we don’t want her at home, but I don’t think I can cope much longer.

“I’m normally a fairly optimistic person, but I bruise more now. I wake up in the middle of the night, worrying. When you’re young you bounce back. I can’t bounce back now.

“Who’s going to look after Siobhan when we die? They tell me that Siobhan will get a placement if we die. Where? Where is it? If we died in the morning, and that place is there now, why can’t she have that place now, not waiting until I’m dead and I have nothing left of my life?

“Even if I thought there was something happening, that some new residential facility was being built in Wexford, but there is nothing being built.”

‘It takes years to realise how you feel’

Over two days I spend several hours with the Powell family in their home. During that time Johanne hardly stops talking. Between cups of coffee, letting the dogs in and out, tending to Siobhan and getting up to find me yet another official letter that documents their struggle to do their best for their daughter, she keeps talking, with urgency and determination. She wants to be heard.

“I’ve had nearly 33 years of thinking about the things I want to say. It takes a good while – years – before you start realising how you feel about having a disabled child. I know I’m a fairly confident person, but when you’re worn down all the time it’s difficult to say these things.

“My identity over the past 32 years has pretty much been as a carer, and to say that I’m not satisfied with that identity, and that I don’t want that identity, is difficult. To say you don’t think you’re particularly good at the one thing that you do, and the one thing you can’t see any way out of, is so difficult.

“In Ireland, as a woman, nearly by definition, you’re supposed to be caring in the ordinary way of life. As an actual carer it’s difficult to say you don’t feel like that. I’ve heard people say, ‘Carers, they’re wonderful, they are all so selfless.’ I’m me. I can be selfish. I can be kind. I can be angry. I’m like everyone else. I am not selfless all the time. I don’t know why a lot more carers don’t say that, but I know a lot of them agree with me when I say it.

“Part of the problem is in the caring society itself: that we need to climb off the pedestal society puts us up on, but it’s very hard when you don’t have a ladder, and when you’re tired.”

When I return to the house on the second day Johanne has thought more about what she wants to say.

“Society needs to stop thinking all carers are wonderful. We are not allowed to have our own opinions. The truth is we are not superhuman. We are not special. We are not wonderful. Well, I’m not. And the more society thinks we are all these things, the more we get shoved away out of conversation or debate, because we’re supposed to be special, and therefore supposed to be able to cope with full-time caring, and people don’t have to think about carers as people with needs of their own.

Family Carers Ireland gave out its Carers of the Year awards this week, recognising the work of hundreds of carers who provide a vital service in Ireland, work that is estimated to save the State €4 billion a year. But Alan and Johanne Powell, who was Wexford carer of the year at last year’s awards, also want their work recognised in a different way – as a burden as well as a service.

“I have got to the stage of my life now where I realise I’m not perfect in any way, as a carer or as a person, and I might as well admit it,” says Johanne. “The longer I go around not saying what I feel as a carer, the harder it will be for the carers coming behind me. The younger parents might be out there thinking it’s not right to be feeling the things they feel. That’s why I wanted to speak out about this. I want to start a conversation.”

If you would like to share your story of caring for a relative with a disability, please contact Rosita Boland on rboland@irishtimes.com

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